My Chiari Experience : Diagnosis and Upcoming Surgery

Truth be told, I’ve gone back and forth about writing todays post. Even though I blog, and am present on social media, in all reality, I’m still somewhat of a private person. Some of you have been loyal readers for a couple of years, and you’ve seen glimpses into my life. You know I’m the wife of a retired Army soldier, and a mom of 4 boys. I like to craft and sew, and cook it up in the kitchen. These are always the characteristics that somewhat define me. If you were to put everything in a box about me, those would most likely fill it. But life isn’t always that simple, is it?

The truth is, I haven’t really been able to sew for over a year now. My vision just doesn’t do fine details like it used to. If I concentrate too long on something up close, it blurs and then it’s gone. Remember that coloring post I did last week? I can’t tell you how challenging that was. When this first occurred, I went to my eye doctor. We decided I was just getting old, and I switched to bifocal contacts. It did help, but the over all problem was still there. One day when I was on the computer editing pictures, both eyes suddenly had a black circle in the middle of the focus area. Blinking, looking at other objects, nothing changed it. And within a few minutes that circle started increasing in size. Eventually almost all my vision was gone.

I texted my neighbor who dropped everything to take me to my eye doctor, who saw me immediately. The good news was that my retina wasn’t detached. The eye doctor started asking me a lot of questions about how often I had headaches. He told me he thought this was the onset of an ocular migraine, and that I should probably follow up with my regular doctor. I told him I had had a few migraines, but never with auras or light flashes, or vision issues. The truth was, every single day I woke up with a headache. Somedays it was better than others. But these headaches weren’t migraines. They felt more like a squeezing. Somedays it was pounding. Sometimes if I drank enough coffee, or took enough advil, they would almost seem like they weren’t there. Except they were. An Always constant ache in my head. He urged me to ask my doctor for an MRI. The next time I saw my doctor, we agreed it was most likely an ocular migraine and we’d keep a tab on things. I didn’t lose my vision to that extent for a few months, and I just sort of shrugged it off. That was in the fall of last year.

This spring my headaches seemed to come on stronger and harder. The coffee and advil weren’t cutting it as well as it used to. I was exhausted all the time. The pain never seemed to go away. In June, I was diagnosed with pneumonia. One of the things that always makes the headaches worse is coughing. When I had pneumonia, I could not stop coughing, and my headaches were beyond severe. I can remember thinking if I could just drill a hole in my head, it would feel so much better. The pain caused vomiting, and my vision loss started up again. I would get the almost total loss of vision several times a day.

When I went to my doctor to have the X-ray to confirm the pneumonia was gone, I told her of my concerns. We decided it was most likely migraines, and I could start some medicines to prevent them and to try to get them under control. She thought it would be the best if I had an MRI to rule anything out, but assured me she thought it would all come back normal.

In July, I had my first MRI. I was relieved it was over and figured I’d be able to start medicines the following week. Two hours after I got home, my doctor called. I knew immediately it wasn’t migraines. I remember thinking, please don’t let it be a brain tumor. Please don’t let it be a brain tumor. My doctor told me that surprisingly enough, something did show up. She told me I had what was known as an Arnold Chiari Malformation. She told me that she wasn’t really qualified to treat me for that, and that she’d put in a referral to a neurologist or neurosurgeon for me.

Of course the first thing I did after hanging up the phone was to google search Chiari. (This site has good info for those of you who are wondering) Suddenly, little odd things made sense. I had seen an ENT earlier this year for the constant ringing in the ears, and feeling like I was losing some of my hearing. I had also been monitored by a cardiologist for the last 2 years because I have dizzy spells. Several times a day, the room will suddenly shift. If I am standing talking to you, most likely I will have my hand on a table, or wall. My husband had commented a few days before that my left foot seemed to be off balance a bit.

The first doctor I saw was a neurologist who spent about 5 minutes with me and told me it was migraines. He assured me that Chiari doesn’t cause symptoms and that if I started some of the medicines I would be just fine. My doctor called to ask me how it went, and when I told her, she told me she thought it would be good to get a second opinion. It was my brain after all.
The second doctor I saw was a neurosurgeon. We had a much longer appointment, about an hour long. There were a lot of questions. Things like, “what sort of things trigger it or make it worse?”. Coughing always made it worse. Laughing. Bending over. Those things always increased the pain, but the pain was constant. We also had a physical exam where he checked a lot of reflexes. My left side didn’t pass a lot of the tests. My reflexes were over reactive. I had numbness and loss of feeling in a few spots. There were several other neurological deficits present. We did more MRI’s. We ruled out aneurisms, and tumors. This neurosurgeon was the first to mention intracranial hypertension. He suggested to surgically place a shunt to increase the flow of spinal fluid.

It was at this point in time that I really put my google search into high gear. Chiari is still somewhat rare (with more MRI’s performed it is increasingly becoming less rare). There are not that many doctors that deal with it. I decided to see someone who dealt with it more than my local neurosurgeon does. My search lead me to Dr Jimenez in San Antonio. After a my first appointment, it was very clear that surgery is my number one option. Every case is different, but at this point, my rate of decline is such that I need to do it now (once you have the nerve damage, it is possible you may not get them back).

So on the 28th of December I am having the posterior fossa decompression surgery to alleviate my symptoms. There is no guarantee with the surgery. It will not cure me. The hope for me is that it will prevent any more damage. The greater hope of course is that my spinal fluid flow is restored, and I will get relief. My recovery will be a long one, and I’m not really sure how it will affect my blogging. The first few weeks may be recipes I’ve taken photos of and never posted, some travel posts, guest posts, or general updates. I’m simply going to try to go with the flow.

When I first told my brother, I explained that it wasn’t so much that my skull was just too small and malformed, it was obviously because my brain was just way too big for my skull. Obviously, right??!!! Because of this joke, I’ll be using the hashtag #BigBrainProblems when I post updates, in case you’d like to follow along.
I so love all my readers. There have been many days that blogging gave me a reason to fight through the discomfort. I’ve been stretched in ways I never imagined this year, and I am forever grateful for my online community. I felt it was only fair that you see the “not so pretty” behind the scenes and that I be open and upfront with you. I appreciate you all so very much!

This is literally exactly what I went through leading up to my diagnosis of the Chiari malformation class 1 imperfect. It was like taking a time machine back and reliving everything as I read your experience. I began fighting this when I was 16. I was hospitalized in the psych ward, told I was inventing the pain just to get attention, and heavily medicated with things that had nothing to do with my symptoms.I had the same issue with doctors and specialists that told me I simply had migraines or that it was imaginary due to childhood abuse. I have had 2 shunts(one replaced after it got infected) and 7 brain surgeries all together to try and deal with this issue. I currently still am fighting it every day doing my best to keep in front of the pain. i am writing this to tell you you are not alone in this struggle. I'm sure you have had many other tell you that but I wanted to personally say that we will conquer this. Everyday it's a struggle just to be you. No one else will know or understand what we go through and the amount of energy it takes to fight the pain we are in daily. I am not going to sit here and tell you the decompression works. My decompression simply exacerbated my problems and awoke other medical issues while not relieving the pain. I will say it is the best, and truthfully, the only course of action and I pray that it works for you! I will be thinking of you and wishing you the absolute best of luck :). Suffer well zipper sister.

Your story is very similar to my own, although mine had progressed to the point that I would lose control of my arms and legs. I would also experience extreme confusion if I was upright for longer than 20 minutes, symptoms improved when lying down. I had my emergency decompression surgery in 1996. They didn't know if I would regain the use of my legs, but was walking the next day and back to work (as a nurse) part time within 3 weeks. I still get symptoms, but my life quality had been dramatically improved following surgery. The secret is to stay positive and focus on the improvements. Best wishes for you and your surgery!

I just wanted to say your story is so much like mine and I had so many Dr tell me that I was fine and it all was in my head. I was also put on 23 different med and most was pain meds and 2 was high narcotics which kept going higher and higher. I can tell you I went 2 years fighting Dr after Dr and finally I had to move to another town and get my records and one Dr already found it but others said no it wasn't it and that's where they left it for 2 years. I was loosing this fight giving up tell my new Dr told me what I had and refered me to a neurosurgeon and I did more MRI and he said yes you clearly have it chiari and I could do the surgery but didn't have to. I was like I can't do this much longer I have to do the surgery. This was on Mov. 4 and on November 16 2015 I got my life back. I'm so happy I can see so much difference and so can everyone else. Thanks for your story.

Sara, I am praying for you and your family as you all go through your surgery and recovery. May God bless you al with the strength you need to rebound to your beautiful self. With God's Grace, Karen Marie

I just had the surgery in Houston two months ago. Today will be your worst day! The day after surgery I was asking for my cell phone and computer! Just make sure you have all your meds because the intern didn't give me two meds, and I ended up in the ER four days after surgery. I had the surgery on Thursday and went to the hotel on Saturday. I had part of my brain removed that was in my spinal column which takes awhile to heal. I think it will be at least three months for me to heal. In two weeks, you will be feeling so much better when you go in to get your stitches out. In a month, they said someone could go back to work, but because of my complications it would have taken one more week to feel like going to work. I was still having headaches at that point also. Any stress would bring on a headache. For a month, I felt like I was sewn up like a scarecrow. The next month I felt a rectangle had been sewn inside my head. The condition became worse for me when I was 29 years old when a drunk driver hit us. Then, various other people hit us - didn't matter if I was driving or my husband. Otherwise, I never knew I had the condition. I had balance problems on the diving board and knew I couldn't do dance routines while I was growing up. After 29 years, I had the surgery. I didn't know by not having the surgery I might develop a syrinx. My syrinx is one of the largest they had ever seen. I had an MRI in 2006 in which it was found. No one told me I could develop a syrinx and that it might become very large or how that would affect me. I went two neurosurgeons and two neurologists in a Medical Community outside of Dallas. When I went to the neurosurgeon, he and his PA were very surprised I was walking and not in a wheelchair. My husband had cancer surgery earlier this year. I had to get us through his surgery. As soon as we returned from Houston, I had an MRI showing the syrinx had increased in size. From July until my surgery in October, my symptoms became much worse. I was feeling horrible. My husband had given me a cold before his surgery, and that was the first time I experienced a headache that would not go away due to the coughing and sneezing. I probably had migraine headaches when I was working, but didn't realize how bad they were. I seem to tolerate pain very well. After that experience, I didn't have more headaches, but had many physical limitations. After the surgery, I have had headaches. One of the worst was behind my eye. When I came home, I had pressure problems in my head which created horrible head pain - not headaches. The PA gave me wonderful advice, so I didn't have to have a lumbar puncture. I am thinking the elevation change caused the pressure problems. Sleeping is the hardest part for me after I returned home from Houston. I was off the meds after 3 weeks. I don't do well with the meds and found they didn't help the head pain. I just spoke with the PA today. We haven't had a vacation in five years and want to travel. She said taking a plane would be fine, but might need to take a decongestant because I will feel pressure differently. When others ears pop, I might feel it in my back or other places. I believe I had many people praying for me, and I was praying for myself before and after the surgery. I also have gone to Airrosti which works on the soft tissue. I cannot prove it, but after he worked on my upper back - two days later I felt a huge change where my head was healing! I think he was able to relax the muscles and help me with the headaches I had after surgery. I was very active until this last year and very independent. Now, it is hard to wait on my husband (2-3 weeks) to get things done instead of just doing them myself. But I know I don't want to lift much and listening to my neck. I lifted a turkey with water in a pan for Thanksgiving, and I could feel that in my neck. I will have another MRI 3 months after the surgery to see if my syrinx is healing itself.

Sara, I am thinking of you and will keep you in my prayers today and for the weeks and months to come! I had brain surgery in April of this year to remove an acoustic neuroma tumor along my cochlear (hearing) and vestibular (balance) nerves. Not quite the same region of the brain, but I understand what it's like to prepare yourself for this kind of surgery! I learned a lot about taking things one day at a time and giving myself the grace to take it slow and not overdo it. I hope your recovery goes smoothly and that you'll be feeling much better soon!

Praying for a safe surgery and a speedy recovery. I went through something similar. They ruled this out and diagnosed me with Pseudotumor Cerebri. I however refuse to get the shunt surgery and live on medications and frequent lumbar punctures to take care of the CSF problem. The migraines I get are so painful I cringe in pain and I do get blind spots and have fainted from it. It took 3 neurologists to rule out Chiari.

Sara, consider yourself lifted in prayer. I hope when you read this you will feel relief. I have a history of migraines which are not classic, but have never heard of Chiari. It has been very, very interesting to read others' accounts here in the comments, and to know that there is hope. Blessings to you and your medical team treating you now and in the coming months!

Hoping and praying that you have a textbook recovery without any bumps in the road. I'm off to find some great content to pin, to keep the ole pageviews up, because that's all I can do besides prayers. wishing you all the best!gail